Friday, September 15, 2006

Alfie has Down Syndrome

We have just got back from Down Syndrome 101, a really good lecture by Lyn (someone) from the Canadian Down Syndrome Society. It's made me think back over the last three months - seems like a lifetime since Alfie was born - and one of the things that stands out is how lucky we have been with our friends and family. They've said all the right things, been so supportive, and more.

It's called Down Syndrome here in Canada, rather than Down's - the reason being that John Langdon Down didn't actually have the syndrome himself, he only identified it - so it's not his syndrome. I guess in England we think that everything is really owned by posh white men, whether or not they had it themselves, so it makes more sense to use the possessive ''s'.

During the lecture we were asked 'what do you think is the most commonly held belief about why a woman would have a baby with Down Syndrome?' - it turned out that people thought they had done something wrong, been near radiation or something. Mat and I both thought the answer was going to be 'because we were the right parents, we were lucky to find each other, and it was meant to be'. That must just be a reflection of how happy we are with our lovely Alfie.

I think I've always thought I might have a child who had Down Syndrome. I didn't have the nuchal fold test with either Alfie or Noah because Mat and I both knew our children were wanted no matter what their level of ability, health, or looks. When he was born I had two real concerns - one, for his health, the other was about people's reactions. I really didn't want people to feel sorry for us or think that the birth of our lovely baby was a sad thing. Luckily, everyone was really positive and supportive. We received so many congratulations and the only comments that annoyed me were from people we didn't know.

At first it really grated when people said 'they are such happy people' or 'your child will be really friendly and cuddly'. There is something very annoying about people telling you what your child's personality will be when they're only a few weeks old - and also, they are wrong! When our health visitor said something to this effect I asked her how an extra chromosone could possibly mean you wouldn't be grumpy when you were older. The answer is that Alfie cries and smiles and grizzles and burps just like anyone else, and he will continue to have good days and bad like everyone else.

Mat and I just feel so lucky with both Alfie and Noah, they are such lovely boys.

Now I don't mind so much if people say 'they're lovable people'. They are really just reaching out - what they are really saying is 'I think your child is nice and it's not a bad thing that he has this disability'.

The other thing I found hard was all the information we were given about schools and job prospects in the future. Matthew pointed out that if we'd been given the same information when Noah was born, telling us what his future and adult life were likely to hold, we would have freaked out the same. When you have a newborn baby you are really only interested in breastfeeding and the next 5 months. You shouldn't have to consider anything of the future - and you really don't know what any of your children will become.

Here is the notice I made for visitors and never gave to anyone!...

Our newborn baby has got Down’s Syndrome. We are just getting to used to having a new member of our family, and one who has different needs and abilities. We aren’t getting very much sleep, and are likely to be a little sensitive. We would be very grateful if you would bear in mind the following:

Notes for Visitors


Stay for ages - unless you are going to help cook, clean, or babysit!

Tell us what personality our child will have when he/she is older (we are looking forward to discovering this ourselves).

Refer to people who have Down’s Syndrome as ‘they’ - as in...”they are very floppy” or “they are very loveable”. Perhaps try “if you have Down’s Syndrome you are likely to be more floppy” instead.

Forget that all children are different and unique, no matter what their genetic makeup.

Visit if you are ill or have been close to someone who has a contagious illness during the past week.

Visit if you think this is the worst thing that could ever have happened. We are very positive about our wonderful baby and think that we are blessed. We don’t want anyone else spoiling our fun.

Imply that it might have been better to have had a test and terminated the pregnancy of our lovely baby.

Tell us that you don’t like the name we have chosen.


Talk more about how cute, gorgeous and perfect our baby is, than discussing Down’s Syndrome and it’s effects.

Let us continue to believe that our baby is the best baby ever born, and obviously a genius.

Offer to make tea and/or coffee.

Bring presents!

Make sure you know something about Down’s Syndrome before you visit. There is loads of up-to-date information online. Things have changed a great deal during the past 20 years.

Focus on possibilities and abilities rather than difficulties and disabilities.

Tell us how well we are doing.

Say ‘Congratulations’!


Anonymous said...

Congratulations, and I love the name you've chosen. I started reading your blog because I have a nephew named Alfie. He's just a bit younger than your Alfie. I'm American and he lives in England so I haven't met him yet. You have a cute little guy there!

Anonymous said...

Hi im a mom of Jacob now 4 and Eva nearly Two. Eva has a super rare genetic condition. I wish i has seen your notes for visitors and actually used it when Eva was born. It really encouraging to hear someone else be very proud of their kids no matter what!